Anyone familiar with Pontine Gliomas??

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Dear Lisa, Sadly, I know exactly how you feel. My daughter Alicia was diagnosed with a diffuse intrinsic pontine glioma on Aug 3, 2005. I remember those first days after diagnosis were overwhelming! Not to say it gets easier, it will never be "normal" again. I think you just learn to adapt to your new normal. I know the prognosis is grim. Although there is hope, do not give up before you begin to fight. I have researched constantly since Alicia's diagnosis. I would love to forward you that info. You can go to my daughters website www.aliciahopefund.com sign her guestbook and give me your email address. Or you can email me off this message board at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----either way. I wanted to mention I have a daughter who is now 1 1/2 years old, when Alicia was diagnosed she was only 10 months too. With Hope, Love, & Prayers! Christine mother of Alicia www.aliciahopefund.com

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ed_12345

Lisa -- So sorry to hear about your daughter. That has to be any parent's worst nightmare. Saying goodbye? You make sure she enjoys her remaining time. Make sure she can do the things she has always wanted to do, and see what she has wanted to see, while she is healthy enough. (Contact Make a Wish, if you haven't yet). Take pictures and videos so her brother will know of her. Be there for her. Do not grieve excessively in front of her. When her health starts to fail, do what you need to do to help her cope with poise and dignity. When it comes time to say goodbye, hug her and kiss her and, if it is in your belief system, tell her you will see her in heaven. Be strong. Ed S.

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Lili21499

Please do send any information you might have. We are in desperate need of help. My cousins daughter was diagnosed this week and seeing as this is all very new to us all of the information we have recieved has been very negative. Please do help! Thanks, Lili

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Jjsdad

Lili, There are many sites parents have created that can (hopefully) asist you in your request for information. My 5 year old son has this "thing" and we continue to fight and look for treatments continuously. We have set up a site for him at jjsmiracle.com. In it, you can find what we have done to date as well as links with information and other children. Sites are updated regularly and we all share what we have. Hope this helps Jim jjsdad

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Ninny

Lili, Go to this web site, my email address is there, send me an email and I will do what I can to help you out. Tina http://www.caringbridge.org/visit/ashleychristian

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Inmemoryofashle...

This is what I know Ashley would say to all of you: HOPE Hope is a happiness held in the heart when happiness seems to be gone. Hope is a quiet joy deep within encouraging us to go on. Hope is a guide when we seem to be lost that can help us in finding our way. Hope is a strong immovable force that our doubts and our fears cannot sway. Hope is a light that burns in the night in a place where a miracle starts. And every good thing will come in it's time, as long as there is HOPE in our hearts. (author unknown) IN LOVING MEMORY OF ASHLEY CHRISTIAN SEPTEMBER 24 1992 MARCH 29 2006

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Hayley5

Please email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. I have information I would like to share with you. My five year old daughter Hayley died 12/24/05 from this. Wanda

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Hayley5

Check out WWW.burzynskiclinic.com . Dr Burzynski is the only Dr. that has successfully treat children with diffused pontine glioma. Their clinic is in Houston Texas. Do not do Radiation and Chemo. It does not work they know it will not work but they will do it anyway. Radiation will cause the tumor to explode in growth and will make it resistant to other treatments. The doctors will not tell you this. They also will not tell you about Dr. Burzynski either. They will tell you that there are no other treatments out there. I know we have already gone through this with our daughter Hayley. By the time we got to Dr. Burzynski it was to late. Wanda

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Inmemoryofashle...

Explain something to me. If this doctor has successfully treated children with this tumor then why hasn't HE gone public? Instead he has chosen to keep quiet. I cannot see other doctors knowing this and choosing to allow other children to die from this tumor because they have chosen to keep quiet about this doctor. Your daughter passed away from this tumor and you are just now making it known about this doctor. There have been many children diagnosed with this tumor and you are just now bringing this doctor to attention. WHY!!!!!!!!!???????? Please send me proof of this doctor succesfully curing this tumor. I know several parents that would love to save there childs life. You can get my email address from Ashley's website. This is her web site: http://www.caringbridge.org/visit/ashleychristian

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Inmemoryofashle...

Just letting all of know, i just went into that web site, i have emailed the staff at this clinic and asked if they have found a cure for pontine glioma's. I will let you all know as soon as i hear something back. There is a big difference between a cure and prolonging someones life.

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